Disclosure of HIV Diagnosis ^†

Abstract

The objective of this study consists of understanding the relationship of care between health professionals and the person diagnosed with an HIV infection. The constructivist approach of grounded theory was used in this analysis as the study method, with data collection between 2020 and 2021. The analysis of the in-depth interviews gave rise to the central category: ’Revealing the relationship between the professional and the person at the time of the positive result for HIV/AIDS’. The proximal relationships between the nurse and the person influence the emotions and actions of both, reflecting on care, bonding, acceptance, and adherence to the therapeutic regimen.

1. Introduction

Currently, the human immunodeficiency virus (HIV) infection and the clinical manifestations of the virus (AIDS) are considered chronic conditions due to the reduction of morbidity and mortality and the intensive use of antiretroviral therapy (ART) and require continuous multidisciplinary action for comprehensive care for people with HIV/AIDS [1]. By 2020, 37.7 million people lived with HIV worldwide, and 73% had access to treatment; 1.5 million people have recently been infected with HIV; 680,000 people died of AIDS-related diseases, and about 6.1 million people did not know they were living with HIV [2].

In primary care scenarios, nurses play a reference role for rapid testing and the detection of other sexually transmitted infections, since they are the professionals who have been a reference for these practices in health services [3,4], also contributing to surveillance and better clinical management of cases. Furthermore, it is necessary to consider that people interact all the time in the context in which they are inserted, related, influence, and are influenced [5].

The research question of this study was: ‘How does the relationship between the health professional and the person receiving the HIV-positive diagnosis occur?’ The objective of this study is to understand the relationship of care between health professionals and the person diagnosed with an HIV infection.

2. Materials and Methods

Qualitative research was developed using the grounded theory (GT) constructivist approach. It is an interpretative study that seeks to understand the meanings that participants attribute to the phenomenon, their points of view, their insertion, their thinking, their doing, and their feelings. It studies how and why participants construct meanings and actions amidst specific situations, contextualized in time, space, and culture [6].

The study was carried out in a municipality in the west of Santa Catarina, which has an estimated population of 227,587 inhabitants and is considered an agro-industrial pole of southern Brazil. Among the health services, the municipality reaches 84.24% of family health team (eSF) coverage and has a specialized care service (SAE) in HIV/AIDS that is a reference for 36 municipalities in the region.

The research participants were health professionals and people living with HIV/AIDS. Data were collected between August 2020 and November 2021, through in-depth interviews. The initial hypothesis of the research was: ’The moment of disclosure of the HIV diagnosis is permeated by anxiety for the health professional and emotional overload for the person with HIV’. The first sample group was composed of 24 professionals working in Primary Health Care (PHC), and the initial question asked was: Tell about your experiences involving care practices for people with HIV. The data obtained led to the constitution of two more sample groups. The second group consisted of 11 professionals working in the HIV/AIDS SAE, and the third group consisted of 10 people living with HIV/AIDS. In total, 45 participants were obtained in the study.

Data analysis was performed through the initial, focused, axial, and theoretical coding steps. The gerund is adopted in coding processes in order to induce reflection on the action and illustrate the movement of the phenomenon under study [6]. Atlas.ti software version 9®, from ATLAS.ti Scientific Software Development GmbH, Berlin, Germany, was used to organize the transcribed interviews. Throughout the analysis process, memoranda were written and diagrams were drawn up. The validation of the study was performed in three stages: validation of interviews with each participant, validation of categories and subcategories with health professionals, and validation of the results obtained with experts in GT.

This study explores results from the doctoral thesis research entitled ’Best practices in the management of care for people living with HIV/AIDS in the health care network of a municipality in the West of Santa Catarina‘. The study respected all ethical aspects recommended by the Resolutions No. 466/12, and 510/16 of the National Health Council of Brazil, and was approved by the Ethics Committee on Research with Human Beings of the Federal University of Santa Catarina, Brazil, under the opinion embodied No. 3,956,203/2020.

3. Results

Data analysis originated in the central category ‘Revealing the relationship between the professional and the person at the time of the positive result for HIV/AIDS’, which is supported by five categories: ‘Working amidst the omission of the diagnosis’; ‘Knowing the condition of seropositivity of people’; ‘Revealing the positive result’; ‘Realizing people’s emotions when they receive the positive result’; and, ‘Dealing with one’s own emotions and the emotions of the person with HIV/AIDS’.

Primary care nurses are unaware of the number of people living with HIV/AIDS in their territories; they do not have a specific instrument for monitoring HIV/AIDS, nor do they have access to HIV/AIDS history in the electronic medical record. Nurses perform the rapid test or the request for serology at the person’s demand, when they offer the test in the care setting, or even when they are suspicious of HIV because there are complaints, signs, and symptoms. Rarely do nurses know about HIV-positive people via staff due to confidentiality. Revealing the positive result of an HIV infection requires counselling, support (especially for pregnant women), care shared by the health team, and encouragement to share the diagnosis with other professionals, partners, and/or family members. It is necessary to be attentive to the person’s reactions and the free manifestation of their emotions: surprise, suffering, crying, guilt, self-punishment, fear of prejudice, or even denial. The emotions of the person influence the emotions and actions of the nurse, who needs to be prepared to deal with the issue. There is a need for training on the psychological aspects involving HIV/AIDS and the moment of the diagnosis in counselling.

4. Discussion

Despite the various advances that have been achieved, with prevention measures, early diagnosis, the decentralization of the rapid test to primary health care, the treatment with effective drugs, and the improvements in the quality of life [7], important limits are still evidenced, among them, the findings of this study show the omission of the diagnosis, the limited knowledge of the conditions of seropositivity of people with the disease, and the ways of relating to these chronic users. The socio-cultural conditions that create vulnerabilities for infection and significant barriers to the control of the epidemic and the equitable adoption of existing biomedical technologies for the benefit of people still persist, thus compromising the quality of care offered [8].

In Brazil, other researchers [9] point out that at the heart of relationships there is still stigma and discrimination linked to HIV/AIDS, in a context permeated by situations of violence, and it is necessary to better recognize, especially in primary care, people’s needs to better understand the reasons for low treatment adhesion, one of the differentiated strategies to deal with limitations and, thereby, facilitate the creation of bonding. However, this potential to promote equity in care finds limits in daily practices, which reinforce processes of discrimination or disregard differences. PHC can pose a threat or deepen the processes of vulnerability in the face of the fear of a breach of confidentiality, increasing vulnerabilities.

It is also relevant to discuss, that in order to better mediate the relationship of care between nurses and the person in the diagnosis of the HIV infection, the nursing professional needs to develop clinical, administration, and management skills, all fundamental, so that the professional becomes able to better conduct the demands of the person, take initiatives, manage and administer both the workforce and physical and material resources and information. The literature points out that these professionals need basic skills, including knowledge of the ethical and legal principles of the profession, training for teamwork, knowing how to better conduct their interpersonal relationships, approaching the team and the person, and, for this, the need to master subjective and technological aspects [10]. Authors [11] emphasize the importance of health technologies as a method of training, learning, politics, and organization.

In this field, the process of unsealing the positive result permeates the domain of light, light-hard, and hard technologies, which are complex and require cutting skills and competencies, consonant with the demands of strategies appropriate to contemporary needs that converge with the longings of health organizations [12].

However, it is worth reflecting that in the process of interacting and developing a relationship with the person receiving a positive result, empathy emerges, and consequently, the need to deal with the consequences of ‘putting yourself in the place of the suffering‘, thus dealing with the person’s emotions and their own emotions. Dealing with this context might have a high cost to the professional, as the requirement of empathy in a continuous way and in the management of unhealthy feelings can trigger effects of emotional and physical exhaustion, generating stress and even leading to the occurrence of burnout syndrome, and feelings of impotence, confusion, and isolation [13].

5. Conclusions

The proximal relationships established between nurses and people with HIV influence the emotions and actions of both, reflecting on care, bonding, acceptance, treatment according to the therapeutic regimen, overcoming prejudice, and improving quality of life.

To deepen the aspects that distance these subjects, it is necessary to uncover the aspects that nourish the distancing from the moment of the delivery of the positive result, eliminate the forms of omission of the diagnosis within the sphere of secrecy and ethical conduct, and invest in the preparation of professionals to expand their knowledge about the conditions of seropositivity of people as well as provide support to better understand their emotions and the emotions of the person with HIV/AIDS.